ENT tomorrow
 

See the new EMT tomorrow. I hope the online rating is accurate. I have looked up docs I know and it does seem to be accurate.

My choking has taken a big increase. Added to this I feel part of the reason I stop being able to talk is not just my breathing. I will be grateful for clarity on this issue. It is very hard to have such problems just talking for any lenght of time. I am used to my chest wearing out but this seems different.

I am in some funk today for reasons I am unsure of. My youngest daughter came over with some groceries Monday and said to talk. That was a huge huge gift. Allowed some clearing of the air. She is the one that has kept distance. I think it helped. In her mind she is convinced if I just ate more and better I'd do better. No matter what I say she doesnt believe I was sick when I was eating like a horse and now that I am chemically sensitive and do have a more limited diet I am still sick. I assured her I do try new foods all the time. She suggested hydropnic cucumbers from the store which I said was a great idea as I didnt know that had them. My city doesnt have a good organic market.

Thanks for listening ...
Annie59

Annie,

Let us know how it goes tomorrow! I'm really glad you're seeing a new specialist. I have to think the secret is to keep plugging.

I don't know if it's true about your daughter, but sometimes I find people are very anxious to be able to assign a cause to my disease. I think it's because it's so scary to know that the cause isn't something avoidable--because that means it could happen to them, too!

Hey, here's something cheering! I just read that they've discovered that one source of perfluorinated carboxylic acids in our blood is the grease-proofing chemicals they use on fast-food wrappers. One effect of perfluorinated carboxylic acids is that they act as an immunosuppressant, decreasing immune cell sub-populations in the thymus and spleen. Hah! Sounds about right to me! I'm going to add regular Burger King to my diet! (OK, not really. Tempting, though...)

Abby
who has actually been living on slow-cooked soups made on the wood stove since she seriously mis-managed the household cooking propane delivery system....simmered pea soup, anyone? With coal-baked potatoes on the side? Yum. No perfluorinated carboxylic acids , though it may contain a bit of creosote...

Abby that sounds yummy. I lived in NC mountains for 10 years and heated with wood and did a lot of slow cooking on the wood stove, I sure miss that warm wood heat.
Mike

Annie,
Good luck with your appointment tomorrow, I'm very glad to hear your daughter is reaching out, this must make you very happy!

Abby,
The soup and potatoes sound delish, how about smoe bisquits or cobbler cooked in a cast iron dutch oven to go with .....

Good luck, Annie. I hope it goes well.

Yes - good luck. Let us know how it goes.

Annie59,

I also have trouble speaking. Not being able to speak is very frustrating and this is my biggest issue right now.

I think there are so many muscles used for speaking that different ones get tired on different days. Sometimes I feel out of breath, other times my mouth has difficulty forming the correct sounds and other times I have a hard time making sounds and my voice gets more and more quiet until I can barely speak.

Another thing that effects my speaking is if I get generally weak, on my worst days, this causes 'brain fog' and then I can't even think of the words I want to say. This is the worst feeling because I know what I want to say, but I can't find the words in my mind.

I hope your appointment went well.:hug:

Yes Desertflower you explained this well and I have the same thing. When I had to be on the phone with my sis and the hosp in October around my mom I push pasted the point of the weak voice to finshed or even have the conversation I needed. that was a turning point for something else. When I pushed past 2 then 3 conversations it felt like parts of my throat were spasmed, locked up. Another piece is I have noticed that if I move my head forward 2-3 inches I can swallow without the normal 'fight' I feel in my throat. No idea what this is about.

Annie59

Annie, How did your appointment go? I know it gets old shuffling from doctor to doctor, but sometimes that is the best way to get help. It does take a good primary care doctor to lead your team of doctors. They can also be your best advocates. I hope you have found that.

I do think swallowing problems occur for me after I have trouble speaking. I have minor problems with food, sometimes food gets stuck in my throat and won't go down, and I easily breathe in liquids, but this doesn't happen too often. I've learned that trouble speaking means it is time for a break. It is amazing how quickly the MG symptoms can come on. Take care of yourself.:hug:

This is Sunday and I have had rough days since the ENT appointment. I put some information up under anesthesia reaction about the appointment. He went out after talking to me and came back in and suddenly was spraying all this stuff up my nose. It was local anesth so he could scope me.

I can write more about this tomorrow. I wanted to check in.

Annie59

Sorry I didnt get back for more on this. I have not been well, not doing as well since I saw the ENT. I am assuming it is still the anesthesia and hoping it passes soon. I had to skip going out with my home aid yesterday to tan cause my breathing got worse just walking across the room so getting changed to go out and do that was out of the question. It reminds me how I modify my activities out of my need to stay out of the ER cause I really dont have doc that I trust for a situation of my muscle/breathing neeeds. yes I have my beloved pulmo who has done tons to try and get me more tests and closer to a diagnosis but he cant do it all.

This level of being worse has me scared. I called an old friend who fought years to get her mom diagnosed. Finally they diagnosed her with Nonhodgkins lymphoma. It was unbelievable how they literally had times they took her to the hosp so sick she couldnt walk and yet due to tests now showing clearly they would send her home. I remember this at times when it seems I will never a diagnosis and help.

Annie59